Archive for the ‘Max’s Autism’ Category

so tired

Saturday, July 24th, 2010

I was up all night.  :)

No, it was for a good reason, really.  :)

I was having FUN.

Imagine that.  :D

I have a new space to call my own.  Max’s room.  He is doing so great at the group home and they say he is really happy there.  :)  So, except for visits on holidays, his room will be occupied by me and my 2 computers.  (And possibly a third if I can get it set up with a wireless connection.)  I’ve added a chest of drawers and put my clothes in here and put in some nice lamps I had been saving and have a candle I love lit up all the time and my music playing and everything.  :)  I put the loveseat in here and kept the bed.  (We aired out the mattress in the yard for three days in the direct sun.)  All Max’s toys are in the closet, though we did throw away a huge number of them that were broken.  As time goes on we may end up donating many of them.  Anyway though, now I can shut the door if I want, I can take a nap if I want, I can stay up all night if I want (which I did tonight)…  I may not hear the phone though, since it’s in the living room, so don’t freak out if I don’t come running.  I am a bit concerned about money, but we won’t know anything until the USDA people make a decision on our house payment amount.

The only bad part about Max’s room is the walls and ceiling at the moment.  He was so destructive there are holes and dents and gouges and food and marker and crayon and torn places on the wallpaper.  :(  I don’t really know yet what I’m going to do about that, but since we have no money to fix it right now, I’m choosing to live with it as is for the moment.  I’ll post a picture in a day or two, once I’ve gotten a decent window covering up.  Right now its a green bed sheet.  :P

Well, it’s nearly 5am.  I guess I should try to sleep some.  :D

Later, y’all…

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Posted in Max's Autism, just stuff, life stuff |

So……

Wednesday, July 21st, 2010

Life is very strange…..

Max is very happy at the group home.  We are super thrilled.  As soon as they send me pictures I’ll post some up here.

Marjorie has suddenly been home a lot more often, almost as if she still lives here though she is slowly moving things out.

Ian is still unsure of how to proceed with college.  I’m starting to think he might need to try a real college with dorms.  Transportation will be a huge issue for him here.

Cookie is freaking out.  Well, really, she’s either freaking out about Max leaving, or we’re seeing the “real” Cookie.  I’ve caught her peeing all over the place.  :(

Cliff is freaking out about Cookie, and Max too, but otherwise, exactly the same.

And then there’s me….  I’m not sure what I am at the moment.  I’m trying to figure that out.  I’ve been nothing but Max’s mom for so long that there isn’t much there for me to build on at the moment.  I know I’m not a happy person and that I really want to be.  I set goals late last year and met most of them.  Well, all but one….  I’m still grossly overweight, though I did lose 50 pounds.  But, making all those changes didn’t make me happy.  So, I think about what’s missing in my life, and honestly, I know what it is, but at this moment I don’t feel I can do anything about it, though maybe I will be able to someday.

I still play Perfect World most of my free time, and really it’s been a life saver for me.  It’s because of some of those folks that so many changes have happened for me.  So I will never regret going back to PW and starting Caius last summer and even more so, starting Snow last October.  Since then so many things have happened, most I’m not even ready to talk about here.  (Not at the moment anyway.)   Hey, at least I am very happy somewhere.

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Well, time for bed.  I’ll try to write in here more often if possible.  No promises though…..

(Wow – This clock is wrong on here…   :P  It’s only 3:18am !  )

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Posted in Max's Autism, games I like... okay Myst., just stuff, life stuff |

Snow is level 51 as of today

Wednesday, October 28th, 2009

And I am so loving playing her.  Tonight we did about four major bosses and two not quite as major bosses.  I am second highest level in the faction and man it is a blast being able to help everyone else.  I am soooooo loving it.

I started a second character just to have someone easier to level for off days.  I resurrected Eyss Mune for that job and shes level 18 at present.  I bought her a rare pet with Snow so I could try leveling up a rare.  (It’s a frogling.)   Its been really fun and my faction mates have all been leveling up secondary characters too.  They are all such great people…. I am enjoying spending time with them more than anything else I’ve done in probably years.

In other news, not so fun, Max attacked me yesterday and punched my chest so hard my left side hurt the rest of the night. It was awful.  He was also terrible at his physical therapist Monday and spitting on the bus this afternoon….  I honestly don’t know how much longer we can deal with this.  His case manager is looking into finding us some help now that Maxim has quit.  (They say they aren’t trained to handle violent cases.)  I’m not sure what the outcome of all of that will be and honestly right now I’m just trying to make it day to day…

Our dishwasher is giving us trouble, as if all that other stuff wasn’t bad enough.  So this evening, I hand washed all the dishes.  It was a pain in the butt but the dishes are cleaner than they’ve been in a long time.  We have to get the drain cleaned or something and I think Cliff is going to call one of his co-workers’ dads who’s a plumber to give us an estimate, or at the very least explain how to fix it.  That should be fun.  :P

By the way, Nathan’s birthday came and I sent him an ecard and an email!!!!  I hope he got them!!!!  I know he’s really busy these days.

I’ve got screenshots and stuff but I’ll post all that later….  Gotta go to bed for now….  ‘Night world.

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, general complaining, just stuff, life stuff |

Yes, it IS all about depression….

Thursday, October 22nd, 2009

…..every thing in my life pretty much, except for a certain virtual world.  I have had so much fun in there giving things to the people I like and for now really enjoying their company.  I wish I could do more.  It has really been fun.  But the money has run out now…  I bought clothes for three people and a pet for one person and gave materials and needed things to others.  And one gets Caenis as a girlfriend, at least for a little while each day.  (And he treats her special as a girlfriend too.  :)  )  And I get to kill stuff and watch sun rises and stand in the rain and fly and all kinds of cool impossible things….  I wish it was real.  So badly.  But the friends are real and I feel so at home with these people.  They make me smile and laugh every day.  :)

Well, anyway, I need to get to bed.  I just don’t want to dwell on the bad stuff before I lay down my head. I’d like to concentrate on the good.  Right now the best of the good comes from that game…  :)  My sad and lonely and depressed self loves the lighthearted happiness that comes from those folks in there…  And one in particular brightens my day every time I see him, green hair and all.  :D

Goodnight…  :)

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, general complaining, just stuff, life stuff, pure weirdness |

Heh….

Wednesday, October 21st, 2009

Another one down?

Yeah, Max’s worker is a no show this afternoon.  Not really surprisingly, Max is 100 times easier to manage today.  So of course I’ve got this song going through my head:

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, general complaining, just stuff, life stuff |

Just for the record,

Tuesday, October 20th, 2009

I hate my life.

A kid on Max’s bus leaned over and spoke to me this morning telling me Max spits on all of them everyday.  So what do I say to that?  “Try living here and getting kicked and punched and squeezed by him everyday”?

I know the old seizure meds have yet to leave his system, and maybe that’s all this is, but therapy went horribly and the ride home from therapy, worse.

The only good things right now?  The woman I talk to on my game who has an autistic son says she considers me her best friend.  :D  That’s pretty cool.  My character also has a young man in love with her (just in the game – he’s seriously just a teen but he knows I’m an old lady with an husband and kids and he says we’re just role playing characters) so I do get virtual hugs when I need them and that’s nice.

In real life though, I have yet to spend the Amazon $$$ from Nathan because I can’t decide what item I want/need more.  I’ll figure it out.  The rest of the money I put on my game.  I’m sorry, but right now, the game is what keeps me going.  Real life is just too damned depressing.  I know it’s a phase and that eventually I’ll get tired of it and quit, but right now I really need this break from reality.

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, games I like... okay Myst., general complaining, just stuff, life stuff |

wow

Friday, October 16th, 2009

It’s been a while since I’ve written anything… A whole week!  Unusual for me.  I’m finding myself wanting to spend every waking moment in Perfect World with my friends.  Ha, yes, I have friends.  Shocking isn’t it?  I enjoy being in there and playing with them more than any of them will ever know.  :)

In real world news, Max attacked his teacher the other day, we’ve started him on his new seizure meds, he grabbed his new worker’s steering wheel as they were crossing the bridge to come back home and now the guy is scared to drive him anywhere, the list goes on from there.  Pick a problem.  His teacher called me while the worker was here yesterday and I have to say it took everything in me not to cry.  She said so many nice things and gave me such praise… Everyone seems to think this is so heroic and brave to do this, raising this child, but really I feel I have no choice.  I feel very trapped and more often than not, very alone.  It is heart breaking to see him destroy everything that we own and hurt us.  She said I deserved a break and someone should send me on a cruise or something.  The reality is, I want to escape inside myself.  I’d rather be living in my fantasy world than the real one and that’s why I play the game so much every day.  She’s talking about signing him up for summer camp, but I am so afraid of that… It’s so much easier to hide in my little imaginary world than it is to do things I have such little real interest in doing like cruises and such.  Anyway, I don’t want to get worked up over all of that so close to my last remaining chance to get peaceful rest until Monday.  But I have to admit, I’m struggling hard with the need and desire to jump back into the game.

Speaking of the game and real life, try as I might, I can’t seem to keep the two completely separate.  One of my game friends now knows my online nickname and my band name and my website, purely by accident.  Oh well…  I did ask him to keep it between us.  I really don’t want that world crossing over into this one.   I want to go there in the game world to enjoy myself and be happy and have fun.  This real world is a constant chore and so damned sad most of the time.  I do talk to one of the group privately about some real life stuff, because she also deals with much of the same stuff as I do, but even with her I try not to talk about it too much.  I really want this game to be my other, freer, life.  An escape.

Anyway, I gotta go get my nap…. Time is rapidly running out.

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, just stuff, life stuff |

Results from MRI?

Friday, October 9th, 2009

Nothing’s wrong.  He’s got a perfect brain.  Ta-da!  Results from DNA and blood work aren’t back yet.  All in all everything went very well regarding the MRI day.   And, Max did well at the neurologist’s office this morning, though there was a very long wait and by the time we got done Max (and Cliff) was bouncing off the walls.  By the time we got home I had totally had enough.  Now I am worn out and my head hurts and I just really want to go into Perfect World and spend the rest of the day flying on my manta.  I think I might even switch to the laptop because typing on here is just too uncomfortable.  I am going to ask everyone to postpone the cake until tomorrow since Marjorie has to work until 8pm tonight…

PS- I forgot to mention, Happy Birthday to me.

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, just stuff, life stuff, pure weirdness |

If I die tonight…

Monday, October 5th, 2009

…it’s because Max threw a toy and hit me on the head.  It’s still hurting and it’s been about 30 minutes since it happened.  :(  He is so aggressive right now.  :(

“Neko Mimi Mode” is going through my head….

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, general complaining, just stuff, life stuff, pure weirdness |

Well, while I am really super freaked out about tomorrow,

Monday, October 5th, 2009

with the MRI actually happening and all, I am also really over excited and flustered at what happened on my video game today, so, I’m kind of wound up.  :P

All my screenshots are on the lappy though so I’ll have to wait to post them, but damn, Caenis Snow had an absolute blast this morning doing some things I have never done before in that game.  And they called her “Snow” which for personal reasons of where the name originated, tickled me pink.  :D

This is the greatest guild in the world.  I’m swearing by this.  :D

Anyway, I felt like a dunce most of the way through because it was all happening so fast, but in the end everyone was so nice and amazing to me that I’m just glowing at the moment.  :D

Unfortunately, duty has reared it’s ugly head and I must face not only evening chores and cooking dinner but also the reality of the MRI and what we are facing tomorrow.  I’ll get a short while to play tonight and then we’re off to adventure and fear in the morning.  Wish us luck.  :(

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, games I like... okay Myst., just stuff, life stuff, pure weirdness |
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